Shoshiplatypus

Warning – medical details.

Bladder woes

As I have mentioned in previous blog posts, I’ve been experiencing increasing problems with my bladder lately. This is a common problem among “ladies of a certain age” but I have always felt that my problems didn’t really fall into that category. I think as I am getting older, it has become worse, and a few months ago it got to the stage that I was so fed up with it that I went to see my GP, wondering if anything could be done to improve my situation.

Group session

He referred me to Women’s Health at the Physiotherapy Department at the hospital. They made an appointment for me to attend a group session initially. To start with I was dubious about this, thinking it was a bit weird, discussing stuff like this with a professional in front of a group of strangers, but the session turned out to be really good. What happens is that the specialist physio gives a presentation of the female anatomy of the region, and explains the various problems and what generally causes them, and the recommended treatment. Each member had the opportunity to ask questions or share their experiences, and we were all sent home with some literature. We were told how to exercise to strengthen pelvic floor muscles, and various methods of retraining lazy or irritable bladders. The idea of having a group session initially, is that with a little professional advice, many of the problems can be dealt with by the individuals themselves. We were told that if we were still experiencing problems 6-8 weeks later, to get back in touch and make a one-to-one appointment. This way, the waiting lists were shortened for those who needed further professional help.

At the end of the group meeting, the physio said that she thought that my problems didn’t really fall into the common categories and that I most probably would need further help.

History

My problems first arose five years ago when I was undergoing six months of chemotherapy for my colon cancer. The particular chemotherapy drug that I was given, oxaliplatin, is known for its neurotoxic effects, and peripheral neuropathy is a common side effect. For most people this is of short duration and generally clears up in time. Initially, in the acute phase, this takes the form of extreme discomfort (something like an electric shock) brought on by contact with anything cold, and it affects the hands and feet, and often the mouth. I had this to quite a severe degree, being brought on by contact with anything even slightly colder than myself, and towards the end of my treatment, my oncologist reduced the dose to try and mitigate the problem. For a week to ten days after each infusion I had to wear gloves to protect my hands, and I couldn’t walk barefoot, and drinking cold liquids (even room temperature) would cause painful spasms in my mouth and throat. It was extremely unpleasant. By the end of the second week of each three-week cycle of treatment, this would have abated, and I would enjoy a week of freedom from symptoms until the next treatment.

There can also be a persistent form of the peripheral neuropathy in some people, not related to temperature, and I discovered this to be the case as I came to the end of my treatment. Five years on, I continue to have some loss of sensation in my fingertips, and my feet are particularly badly affected, with numbness and pins and needles. I cannot go barefoot at all, and have to wear socks constantly, even in bed and throughout the summer, because with the altered sensation, I cannot bear my feet to be touched. Movement of my feet against the bedding, or wearing shoes without socks, will set it off. I consider it a small price to pay for being alive, and it’s a constant reminder of what I went through to get where I am today, for which I am very grateful. I never take for granted what was done for me and the excellent treatment I received from the NHS, and these symptoms serve as a reminder to be thankful. There are always people a lot worse off than oneself.

There is a rare complication as a result of the neurotoxicity of oxaliplatin, which is thought to be caused by damage to the dorsal root ganglia, causing Lhermitte’s sign – an electric shock-like sensation in the body on flexion of the neck, which is a rare neurological side-effect more often associated with multiple sclerosis. Associated with this is urinary retention. I realised that I was suffering from both these symptoms and found a fascinating article on the subject when I did some research online. I passed this article on to my oncologist and she was very interested. She said she had not had any patients with this particular complication, but one of her colleagues had; it is quite rare.

The bladder problems in my case presented as follows. I seem to have lost sensation in my bladder and cannot tell when it needs emptying until it is really full, when I experience urgency, with occasional slight incontinence and post-micturition drip. Also, it is impossible to empty my bladder fully without effort – I have to strain in order to pass the residue. Over a period of two or three days while I was still undergoing chemotherapy, I measured the amount I was passing, and how much was being retained, and reported these findings to my oncologist. There is always the worry of any residue causing infection, but she said if I was eventually managing to evacuate it, I should continue without intervention, because if we resorted to catheterisation, this would also increase the risk of infection.

I carried on with this and accepted that this was just the way things were going to be from now on, but in recent months it seems to have become more of an irritation, possibly because I am getting older. The problem is not helped by the fact that having an ileostomy, I have to ensure that I keep very well hydrated, so I am producing more urine than normal.

One-to-one appointment

After the group session at the Women’s Health clinic, I had a follow-up appointment with another member of the team of three specialist physiotherapists. She asked me to keep a bladder diary over a period of four days, logging everything that I drank, and how much I was passing. This had to be a more complicated diary than the standard, because it also included the amount that was retained until it was evacuated by straining, and I also had to differentiate between the mild incontinence as a result of urgency, and the post-micturition drip.

She said it may be necessary for me to have a bladder scan, and she was surprised that this was not suggested when I first reported the problem five years ago.

I was sent another appointment in April, but this was cancelled because of the lockdown, and I was told to contact them again in June to reschedule. As it happened, they phoned me at the beginning of this month and arranged a telephone appointment with the same physiotherapist I had already seen. This took place yesterday.

Telephone appointment

Recap of previous appointment and brief overview of my medical history

The physiotherapist reported discussing my case with her colleagues on the team. They agreed that my problems were most likely the result of neurotoxicity caused by my chemotherapy, oxaliplatin, in 2015. We discussed the neurotoxicity of the various chemotherapy drugs and the ongoing effects on the body. I explained about the peripheral neuropathy in my fingertips and, more severely, in my feet, and the mild Lhermitte’s sign I had suffered for a while, known to be associated with damage to bladder function. I emailed her a copy of the article mentioned above. She was pleased to have it, saying that any information was useful, because it would help with their continuing education.

Bladder diary

I emailed her the copy of the bladder diary I had kept after my last appointment in February. She was impressed with the detail and information that it contained, and from it, was able to ascertain that a) I was drinking a lot (I reminded her about my ileostomy) and b) my bladder did seem to be filling to a larger than normal capacity, which would explain the urgency.

Symptoms

I explained about the lack of sensation, leading to sudden urgency when my bladder was full. We discussed briefly the post-micturition drip that I experience, and she was certain that this was the result of nerve damage caused by the chemotherapy.

Explanation

She explained that when most people experience bladder problems, the reason is that the conscious brain tends to take over and dictate bladder function; it is conscious thought which overrules the normal functioning of the bladder, which should be governed by the autonomic nervous system. People worry about becoming incontinent while out and about, for instance, so they tend to go to the toilet more frequently than they need, resulting in a lazy or irritable bladder. The normal treatment they recommend for this is to re-educate the brain, by restricting the number of visits to the toilet, gradually increasing the time interval, so that eventually the bladder returns to normal functioning. The treatment is therefore of a cognitive nature because there isn’t actually anything wrong with the bladder itself. Often, the pelvic floor muscles have become weakened, perhaps through childbirth or increasing age, and this gives rise to the fear of accidents and the development of bad habits, which only exacerbates the problem.

However, in my case, it seems that the problem is with the bladder and not with the conscious brain, and they thought that the opposite recommendation might be beneficial, which went completely against the grain for them, but she said that you have to think outside the box and treat each individual patient according to their needs. She thought that in my case, the connection between my bladder and the autonomic nervous system had been disrupted, because of the damage to normal sensory input. Prolonging the intervals between toilet visits would therefore not be beneficial in my case. From my bladder diary she could see that I normally had an interval of about 4 hours between toilet visits, which was quite a long time. This was presumably because I was unable to feel the need to go until it became very urgent. Also, bearing this out, the volume I was passing was very large compared with the normal. She said my problem was retention, and the post-micturition drip was a result of this; also that the nerve damage to the bladder was making it difficult for me to empty completely. My bladder feels as if it is empty, but from experience I know that this is not the case, and by straining, I am able to expel an appreciable additional quantity.

Treatment

She recommended initially that I double the frequency of toilet visits from four-hourly to two-hourly, and for four days to keep another bladder diary, recording the amount which is expelled initially, naturally and without straining, and then the residue by straining (as on my previous bladder diary). She said I would not need to record the drip, or the liquid I consume, as she already had this information on the original bladder diary.

Progress so far

Having put this new regimen into practice for the first day, and keeping the diary as requested, things have definitely been easier. It is somewhat annoying having to set the timer and to drop everything and make a scheduled toilet visit every two hours, but if all goes according to plan, this interval will eventually be increased. On several occasions I have felt some urgency as I approached the scheduled time, although much less severely than previously. On the other occasions I have not felt the need to go at all, and it is only when I have actually got there that I have realised that there was a need after all. This bears out the fact that I lack the correct sensations to inform me that I need to go. On the occasions when I have experienced urgency, the volume has been more, which also confirms what we know to be true, that my bladder is only able to sense that it needs to be emptied when there is a larger amount present. Despite the irritation of so many toilet visits, my body has felt a lot more comfortable.

Follow-up

The physio asked me to make a further appointment with her, either for next week or the week after – this would also have to be by telephone as they are still not doing face-to-face. (This has now been fixed for next Thursday). She will then be able to ascertain whether this approach is working. If so, it would mean that I am beginning to create new pathways between the automatic nervous system and my bladder, so that I will gradually be able to sense my need to empty before it is too full. With time, they will gradually increase the time interval between toilet visits, to a more normal pattern, and I should be able to sense when to go.

Conclusion

My case is an unusual one, and not something the physiotherapy team commonly encounters. It would have been all too easy to lump me in with the more frequently encountered cases and give the same blanket recommendations, but this is not what happened. They have listened carefully to what I had to say, and they have clearly put a lot of thought into my case, and their response makes a great deal of sense to me. As with all my encounters with the various professionals responsible for my care at the hospital, I have felt validated by the way they have listened to me and taken me seriously, and gone the extra mile to help me. I am very impressed with this, and in this case, I feel very confident of a favourable outcome.